Thursday, February 26, 2009

The fluid in Mom’s pleural cavity was filling up rather quickly, so something needed to be done to control it. After much deliberation, and even a change of plans, we opted to have a PleurX catheter inserted so that we could drain the fluid ourselves every few days. It should alleviate her coughing almost entirely, making it easier to talk on the phone or just have a normal conversation, not to mention making her breathing easier, hopefully giving her more energy.

So the procedure on Tuesday went fine. It was a bit more painful than we expected, but then again, it did involve a lot--cutting a hole under her right armpit, placing a tube about 18 inches long into her body, half of it under the skin poking through muscle and tissue into her pleural cavity, and the other half sticking out of the front of her body so that we can attach a vacuum-bottle every other day and drain the fluid. So not exactly a cake-walk.

When the catheter was inserted, they had Dad & me go back with Mom for me to do the first draining under nurse supervision. It is a simple enough procedure, but the sterility of it all is a bit rattling for me. And the combination of the heat in the room, the lack of food on my stomach, the reality of what I was actually doing, and the pain it was causing her was more than I could handle. I didn't faint, but I did have to sit down with my head between my knees, breathing deeply for a few minutes. I regained my composure and we finished up, draining a full liter from her. The pain was excruciating as the lung reinflated, but after about 15 minutes, it began to subside, and within another hour, we were headed home. Much better than 2 nights in the hospital that the other procedure would have required.

All day Tuesday, Mom was a bit uncomfortable, but was better by Wednesday afternoon, and even better today. We had to drain it for the first time on our own this morning, and it went relatively smoothly. It was still a bit painful, but only for 2 or 3 minutes. And I got light-headed again, but regained composure fairly quickly. I think I did it all just right, and we drained about 400cc from her, a difference she said she could definitely feel. So, all in all, that was good.

But I'd still rather not have this piece of chocolate.

When we were finished with "the procedure" and had made our way back to the den, I hugged Mom as tightly as I could without hurting her, then I crawled in my daddy's lap for a few minutes. I couldn't help but think how nice it would be to be a child again--carefree and unaware of the harsh realities of life.

But I'm not.

The prayers you all are praying continue to lift us all up in amazing ways. I know the strength that I feel is not my own, and the sense of peace that I feel is not coming from within me. Mom gets 4 or 5 cards in the mail every day, and loves the flowers that people are sending. Those of you that remember Dad with a card or note are wonderful to realize that this is just as hard on him as it is on her. But he is learning how to negotiate household responsibilities, and Mom is learning how to let him. He has gotten pretty good in the kitchen, and today I taught him how to start the washing machine. They had enough food in the fridge tonight to have the five of us down there for dinner, which was really nice.

I said to Mom earlier today that I really never understood the comment that someone has "good days and bad days" before, until now. But it's very true. Cancer brings with it good days and bad days. And we are learning to savor the good, and patiently endure the bad ones, trusting that the sun will shine again, and that all will be well.

Remember the movie Forrest Gump? I loved that movie. It has been said that the world will never be the same once you have seen it through the eyes of Forrest Gump. And how true that is!

A couple of nights ago, Joel reminded me of one of one of the lines from that movie. Forrest’s mama, played by Sally Fields, is on her deathbed, dying of cancer. She has a conversation with her son Forrest, a mentally challenged adult, played by Tom Hanks. She is doing her best to explain to him that she is dying.

Forrest Gump: What's the matter, Momma?Mama Gump: I'm dyin', Forrest. Come on in, sit down over here.Forrest Gump: Why are you dyin', Momma?Mama Gump: It's my time. It's just my time. Oh, now, don't you be afraid, sweetheart. Death is just a part of life. It's something we're all destined to do. I didn't know it, but I was destined to be your momma. I did the best I could.Forrest Gump: You did good, Momma.

Good stuff, indeed, but the conversation didn’t stop there.

Mama Gump: Well, I happened to believe you make your own destiny. You have to do the best with what God gave you.Forrest Gump: What's my destiny, Momma?Mama Gump: You're gonna have to figure that out for yourself. Life is a box of chocolates, Forrest. You never know what you're gonna get.

I guess in many ways like a box of chocolates. But there’s just one thing. When I am fortunate enough to be the recipient of a box of chocolates, I might take a bite of one and realize that what I’ve selected does not really appeal to me. So I can simply throw it away.

But not this time. Life has given me one of those chocolates that I don’t really care for…you know, like those hard, chewy pink- or orange-centered chocolates. I’d just as soon put it back for someone else, or better yet, throw it away so that no one else has to eat it.

Tuesday, February 24, 2009

Just wanted to let you all know that there has been a slight change of plans. After some additional information and a family discussion last night, we opted for another way to manage the fluid in the lungs, called PleurX. It is a catheter that will allow Mom to drain the fluid from the pleural cavity on her on, as needed. It is a simpler process, and will not require an overnight stay, as it is an outpatient procedure. We are having it done this morning, and should be home by early afternoon.

Thanks for the continued prayers and support. They mean the world to all of us.

Monday, February 23, 2009

I know there are a few folks who read this blog for the latest news on Mom's health, so I wanted to post an update today after our latest round of appointments.

She had her first visit with the oncologist last week, and that went fine. It was essentially just a typical "first visit," so nothing was decided--the doctor just went over what they knew at that point, and ordered a bone scan, which was done on Friday. The cancer seems to have originated in the lung, and had metastasized to her lymph nodes by the time of her intial diagnosis. And now, the results of the bone scan show that the cancer has, as we had feared, metastasized to her bones. The results of the scan showed "4 areas of uptake" in her ribcage, which essentially means it is present in 4 areas in her ribs. There is also cancer present in her spine--thorax, lumbar, and cervical bones.

We had an appointment with a pulmonologist today to discuss palliative treatment to control the fluid that will continue to build up in her pleural space due to the cancer in the lung. She goes into the hospital (Emory) tomorrow for a procedure that will require a 1 to 2 night stay--flowers would certainly cheer up the room, if anyone feels so inclined! She will first have an ultrasound to verify the presence of fluid, then have the fluid drained. After that, they will inject a talc inside the the cavity around her lung that will cover the exterior of the lung, creating an adhesive-like substance. This then creates a seal in the pleural space so that the fluid cannot accumulate, thereby keeping the lung from losing its "space" in the pleural cavity. The procedure is call a "pleuraldesis."

I keep hoping that one of these apointments will bring a ray of hope, but that's not happening. I am trying to keep my spirits up so that she will stay positive and strong, enjoying the time that she does have left. She wasn't having a good morning at all when I picked her up, and the bad news from the appointment about did her in. She was very down and sad. However, I went by around 2:00, and she seemed to be in a better place emotionally, and possibly even a bit better physically. I think for her, those two are very definitely connected. If we can keep her positive, enjoying the now, and as busy as she is comfortable being, then she will feel better and enjoy what time she has left more.

Prayers are continued to be appreciated, as are cards and other reminders that we are all holding her close in our hearts.

Sunday, February 15, 2009

One of the things that I have learned about myself in my almost 43 years is that the depth of my emotions often, if not always, exceeds my ability to express them verbally. Perhaps if I had a running recorder at all times, then I could fully convey the depth of things I feel using words at the exact time that I feel them. Then again, I don’t even know if that would help.

I don’t think I’ve ever been as frustrated with that part of myself as I am now.

Another thing that I have learned is that my memory of how something feels, even though I cannot express those feelings verbally, far exceeds my memory of other things that have happened or that I have encountered in my past. Things like names, dates, facts—even stories or events. I suppose the running recorder would help that as well, for those times when I meet someone and want to remember a story or name or fact that person tells me for some reason—to include in a sermon, to blog about later, or even to recall it for practical purposes, such as a phone number, website, or email address. That is partially why I have begun carrying around a small, leather-bound book with blank pages, in which I can record such things. I can’t seem to remember the actual words that accompany the information or experience, but I can remember how it FELT to be in my skin at that very time, even years later.

I don’t think I’ve ever been as grateful for this part of myself as I am now.

This trip, this experience of being in this place, in Costa Rica, has brought up so many emotions, so many feelings, so many memories. In the past 24 hours, I have seen, heard, and smelled the same things that I did when I was on this same plot of land in 1978, at age 12 with my brother Hunter, who died 18 years later. And in the past week, as I have begun to live into this new reality of my mom’s cancer diagnosis, I am acutely reminded of how it truly felt to live into the reality of Hunter’s death when it seemed more imminent than ever on those hot summer days in Atlanta in 1996.

I don’t yet understand how those memories are connected, really. But I do know that I have experienced these same feelings only once before. And being a “Feeler” on the Myers-Briggs Type Indicator, I find comfort in the familiarity of the feelings. In other words, I am not afraid of them because I know them. I know them intimately.

For better or for worse, these feelings are my long lost friends.

The difference this time is that because I know them, I know that I can actually choose “better” or “worse.” The first time they walked through my door, I had no idea what the gaping hole that Hunter’s death would bring might feel like. I was afraid of it. I did not know it. I did not know a death that would reach down and grab my very heart and soul and wrench it time and time again. And it scared me.

But this time I do, and I am not afraid. This time, I know that the death of a loved one’s body does not have anything to do with the relationship we have with that loved one. My brother Hunter, whom I adored, and whom I am told adored me even more, is still a very real part of my life. I have never been as sure of that as I am now, experiencing this country he loved among people he loved, taking in sights and sounds and smells that he loved. I realize that Hunter is just as much as part of my life now as he was when we rode those horses together on this very beach all those years ago. He is just as much a part of my life now as he was when we laughed at the antics of a friendly monkey, or when we explored the jetties and tidepools of this beautiful paradise searching for ocean treasures. Hunter & I were and still are connected in a way that I never understood, and have given up trying to understand. Our still-very-much-alive bond has become just another one of those parts of my life. I gave up trying to figure it out long ago, and have come to accept it as it is.

And I thank God for it.

In a way that I still do not understand, Hunter is as much a part of my life now as he was when he was alive. A part of me is sad that he is not here to be a real presence, a real part of the boys’ lives, because he was such an amazing person, and they would love him and he would adore them. But the gaping hole that I thought his death would leave is constantly filled abundantly and beyond with memories of him. The absence that I thought would be painful forever overflows with the memories I have of our times together, and with the sure knowledge that we are still connected. We are connected, and so he is still very much with me, a part of me.

So as I live into this new reality that brings along with it feelings that are not so new, I am not afraid. I choose “for better” rather than “for worse,” because I know them. I know the road ahead will not be easy. But I choose this day to do it in full faith and trust that God will be with us every step of the way, I choose to travel this road cloaked in the knowledge that death is not to be feared, because nothing in life or in death can separate us from the love of God...or the love we have for another.

Wednesday, February 11, 2009

We got the preliminary pathology results back yesterday on the fluid that was drained from her lungs, and the news is not good. The initial results suggest that it's advanced stage 3, probably stage 4, and that agressive treatment would be the only option. Obviously, any "treatment" would be palliative, not curative. Mom has initially said that she did NOT want treatment that would make her feel worse than the cancer does, so I'm guessing she will opt out. But we will wait to see what the oncologist says before we decide for sure. I'm sure the family will honor her wish, regardless of what it is.

My GUESS, based on knowledge of her history and reading between the lines when I was listening to the doctor, is that the initial cancer diagnosis will stem from somewhere else, and that it has metastasized to the lung. Not that it really matters at this point, but we should know more about that when we see the oncologist. Hopefully that will be late this week or early next week.

I am literally in shock. Please keep us in your prayers. Regardless of what we find out, and what she decides about treatment, the road ahead will be rough. The boys know she has cancer, but not the extent of it. We don't see any benefit to telling them how bad the prognosis is--we're just going to encourage them to treasure along with us the time we have left with her.

We still plan to leave for Costa Rica on Friday, and I pray it will be restful, restorative, and centering for all of us. It seems will we need it more than ever in the weeks and months ahead. I've been worried about from where the strength would come, but I am finding it through God's grace and the prayers of many. Thank you all.

Monday, February 09, 2009

In case anyone is actually reading this blog to find out about Mom, I wanted to give a quick update after meeting with her primary doctor this morning. Providentially, it was an appointment that she's had for a couple of weeks, but it gave us a chance to ask the several questions that have arisen since we learned of this new diagnosis.

The hard part is that we don't really know anything more after talking with her, but I would say that we might feel a bit more hopeful. Dr. Black did refer to it definitively as lung cancer, but we still won't know what kind or where else it might be until the pathology results from the lung fluid come back. Then, depending on those results, they might opt to do a brachioscopy--which is essentially taking a small piece of the lung out and looking more closely at it to determine what kind we're dealing with.

All of this should take place in the next week or two, since, according to Dr. Black, they "don't mess around with cancer," and do whatever it takes to get things moving as fast as possible. That's reassuring as well. But I still feel like we are in a "hurry up and wait" kind of mode, and that pretty much stinks. I guess I've gotten pretty good at it over the past few years, but it's definitely not any easier!

So that's it. Again, thanks for all the words of comfort and the promises of prayer. We can truly feel the love and support. :-)

Sunday, February 08, 2009

If you know my mom, if you've been around my mom in the last few years, if you love my mom like so many people do, then I imagine you felt that same sense of shock that I did when we received the news on Friday. Perhaps, like mine, your heart already feels a bit of its brokenness because of the looming questions and decisions that we must face. Or maybe you feel a sharp pain in your gut that I'm sure is some primal instinct we get when we want to turn tail and run, but realize we are trapped. But I pray that you also feel God's calming, soothing presence surrounding you, as I did while we listened carefully to the doctor's words.

If only it had been "just" pneumonia.

We don't know much, but already we do know that the next few weeks will likely be full of anxiety, questions, uncertainties, and decisions. The first round of test results is due back early this week, hopefully Tuesday. At that point, we will begin to discern the best way forward. I suppose the best way to keep folks abreast of all that is going on is via this blog, at least for now, so that's what I will do. In the meantime, we ask for your prayers and your support. I believe both can make an impossible situation bearable, both are powerful witnesses to our common bond in life and faith, and both are gifts we can share.

I receive a daily devotional from the Henri Nouwen Society , then send it out to my Emory students. They are always good, and occasionally seem eerily appropriate. Such was the case today.

Care, the Source of All Cure

Care is something other than cure. Cure means "change." A doctor, a lawyer, a minister, a social worker-they all want to use their professional skills to bring about changes in people's lives. They get paid for whatever kind of cure they can bring about. But cure, desirable as it may be, can easily become violent, manipulative, and even destructive if it does not grow out of care. Care is being with, crying out with, suffering with, feeling with.

Care is compassion. It is claiming the truth that the other person is my brother or sister, human, mortal, vulnerable, like I am.When care is our first concern, cure can be received as a gift. Often we are not able to cure, but we are always able to care. To care is to be human.

Friends, may we all learn the gift of CARING first, and may the cures we seek--as daughters, doctors, earth-lovers, teachers, friends, ministers, relatives, counselors, writers, and people-lovers--may they grow out of the deep care that we have for one another.

About Me

I like to think I'm a pretty cool gal, wife to Joel and mom to three awesome young men. I'm also a daughter, a sister, a friend, a seminary graduate, a pastor's wife, a math teacher, a music lover, a bread baker, an occasional potter